Four major university health systems—Penn State, University of Pittsburgh, Temple University and Johns Hopkins University—make up the PaTH Network. It’s one of 29 health data networks across the country and a coordinating center, collectively known as PCORnet, funded by PCORI.

PCORI’s mission is to help patients, their caregivers and healthcare providers make informed healthcare decisions based on outcomes that are relevant to those living with a particular condition. That means designing studies that track these patient-centered outcomes.

Dr. Cynthia Chuang

“It’s traditionally been the researchers who have determined what the outcomes should be in studies,” said Dr. Cynthia Chuang, professor of medicine and public health sciences and Penn State’s lead principal investigator on the project. “For a long time, that really seemed to make sense, until you think about: How do we know that these are the outcomes that really matter, and who should the outcomes matter to? When you think about it that way, it should be the patients who say, ‘Having my condition, these are the things that are most important to me.'”

While researchers typically focus on scientific measures like lab values, Chuang said, patients might be more focused on their quality of life, whether or not they can walk without using a walker or how they can take fewer medications.

The PaTH Network is using PCORI’s funding to study patient-centered outcomes for atrial fibrillation (AF or A fib, the most common type of irregular heartbeat) and idiopathic pulmonary fibrosis (IPF, a rare lung disease with an unknown cause). All of the clinical data research networks in PCORnet, including the PaTH Network, are also working together to better understand the development and treatment of obesity, as well as how some people maintain a healthy weight across their lifetime. By joining forces with other institutions, researchers will have far more patients involved in the study—potentially 3 million in the PaTH Network alone—making the study results much more powerful.

The benefits of larger studies are perhaps obvious for rare conditions, like IPF, for which a lone institution might only have a handful of participants. But large groups of participants also help advance research in more common conditions, like atrial fibrillation, that have many treatment options and no gold standard of care.

The unveiling of the Nittany Lion statue at Penn State Health St. Joseph.

When Dave Ruppert found himself in the emergency department of St Joseph Medical Center in Reading in 2012 with symptoms that eventually led to a diagnosis of pancreatic cancer, he also found a new healthcare home. Impressed by the professionalism, personal attention and level of service he found at St. Joseph during that tough time, Ruppert later had all his medical services transferred to St. Joseph.

“It wasn’t just any one person, but everyone from the providers to the billing department,” he said. “They are willing to help you out, they understand you and you don’t get shuffled around. They take care of you as an individual, not as a number.”

Dr. Mortel joins fewer than 100 people who have earned this distinction since its establishment in 1973.

“I know that only two to four people are selected each year, and that since the award has been set up, only three faculty from the College of Medicine have been recipients of this award,” Mortel said. “I am proud to find myself in a very small circle of distinguished people to be selected from the College of Medicine.”

Mortel served in a number of positions during his 30 years at Penn State Hershey. He was promoted to full professor in 1977, only five years after joining the faculty, and later became the chair of obstetrics and gynecology in 1983.“His leadership at Penn State has been so very instrumental in establishing this Medical Center as one of the premier institutions in the country,” said Dr. Chester Berlin, professor of pediatrics, in a nomination letter for Mortel. “Penn State was so very fortunate in having Dr. Mortel in leadership positions so early in the life of Penn State Hershey.”

Added Dr. A. Craig Hillemeier, dean, Penn State College of Medicine, CEO, Penn State Milton S. Hershey Medical Center and Health System and senior vice president for health affairs, Penn State, “Dr. Mortel’s prolific efforts over the years have supported the growth and reputation of Penn State College of Medicine and Penn State Milton S. Hershey Medical Center. By helping train aspiring physicians and conducting groundbreaking research in our labs, Dr. Mortel deserves to be recognized for his service to Penn State.”

Editor’s Note: Penn State’s THON Weekend is Feb. 20-22. Students will dance for 46-hours to support pediatric cancer patients. To date, $114 million has been raised and donated to Four Diamonds, a foundation that supports the families of pediatric patients at Penn State Hershey Children’s Hospital, and the cancer research done here. For more information on THON, or to watch the activities live, visitTHON.org. For more information on Four Diamonds, visitFourDiamonds.org.

Playing iPad games and shaking a tambourine may not seem special to the parents of most preschoolers.

But, for parents of children battling cancer, it’s the little things like these that can brighten even the darkest of days.

Four Diamonds supports children and their families facing the challenges of pediatric cancer by paying for care and treatment not covered by insurance or other means as well as additional expenses that disrupt the welfare of the children.

Lydia Hess

One of those families is the Hess family from Harrisburg. Lydia was diagnosed with leukemia in April of 2014 at the age of 2.

Four Diamonds makes it possible for 16 specialty care providers to be available exclusively to Four Diamonds patients and their families – including child life specialists, a clinical nutritionist, a clinical psychologist, nurse specialists, social workers, music therapists, a clinical nutritionist, and pastoral care.

“All of those things have made Lydia’s life and our days so much easier,” said Julie Hess, Lydia’s mother. “Just to make one day easier is a big deal to us. We’ve had a lot of really hard days.”

Lydia’s diagnosis was a complete surprise to the family. Last winter, she had recurring fevers.

“She was 2 and interacting with other kids — going to preschool once a week, swim classes and church– so we figured she was just picking up all the germs,” Julie said.

In April, Lydia’s fever spiked higher than normal and she began complaining of finger pain. Julie and her husband, Brandon, suspected something unusual was happening.

“The pediatrician examined her and said ‘let’s do some x-rays, let’s do some blood work,’ but they never mentioned the word cancer or leukemia,” Julie said.

Two hours after Lydia’s appointment, her doctor called the family.

“You know when you get a call at home that quickly after you’ve been there, it’s not good,” Julie said.

If laughter really is the best medicine, Bailey Sanders is going to make a great doctor. Sanders was chosen by her peers in Penn State College of Medicine’s Class of 2014 to give this year’s student commencement address. The future doctor kept the crowd in stitches, threading together humorous examples to illustrate three components to building a life and career free of regrets.

Sanders posited that passion is one key ingredient, and for an example looked to a scientist who drank the contents of his own petri dish and “documented his subsequent suffering with regular biopsies and his mother’s opinion of how his breath smelled.” The unconventional experiment resulted in a Nobel Prize.

On July 23, Melissa Masse celebrated her 34th birthday in the operating room of Penn State Hershey, watching Dr. Riaz Shah hold up a kidney while the medical team sang “Happy Birthday.”

Earlier that morning, doctors had harvested a kidney from her husband, Chris, and sent it to a major metropolitan area where it would be given to someone as unknown to the Masses as the donor whose organ became a birthday present for Melissa.

Melissa and Chris Masse hold flowers between them to mark the scars that forever bind them as recipient and donor in a chain that gave Melissa and three others a second chance at life with a healthy kidney.

The surgeries were just two links in a complex transplant chain that allowed four people to receive healthy kidneys despite not having compatible live donors. Known as a “kidney swap,” Penn State Hershey offers the program as an alternative to dialysis and years of waiting for a deceased donor organ.

Melissa had been diagnosed with diabetes at age 11, but it wasn’t until stomach trouble and vomiting sent her to an emergency department in August 2012 and doctors noted her poor kidney function that she was sent to a specialist. By the end of the year, the South Williamsport woman was added to the list of people waiting for a healthy kidney.

Because the average person waits more than six years for a kidney, and because the mortality rate for those on dialysis is 50 percent after five years, Melissa’s husband offered to be a live donor. Unfortunately, he wasn’t a match. Nor was her boss. Or her best friend.

“I was devastated,” Chris said. He knew his wife was hoping for a live donor so there would be less chance her body would reject the new kidney. So he told transplant coordinator Vicky Reilly that he would donate his kidney to someone he had never met so that his wife could receive a healthy kidney from someone she had never met. (more…)

Growing up in Togo, West Africa, Elom Amoussou-Kpeto was acutely aware of the barriers that kept people from accessing quality health care. Not only was there a lack of highly skilled providers, but transportation was a challenge.

He spent a lot of time with his grandfather, a nurse, who cared for the whole community “doing almost what a doctor would do,” he said.

Amoussou-Kpeto realized that by becoming a doctor, he could give so much back to the community: “That is my ultimate objective.”

So, upon graduating high school with good grades, he applied to Camden Community College near Philadelphia, where an uncle lived. Once accepted, he began the process of obtaining a Visa to come study in the United States, where he felt like he would get a better education.

After two years studying biology there, he transferred to Temple University to finish a degree in biochemistry. It was a rocky road though.

Language was a huge barrier. Amoussou-Kpeto grew up speaking Ewe and French. In school, he learned to read and write some English, but had difficulty expressing himself in the new language. “I felt like time was constantly working against me–especially with standardized tests,” he said. “I felt like I was fighting a combat on two fronts–between who I am and who I want to be.” (more…)